Tuesday, June 4, 2013

I wanted to write a post a few weeks ago to let everyone know about my upcoming reconstruction surgery ... unfortunately, I had so much that I wanted to fit in before I went into the hospital that I never wrote it.

So here I am, POST surgery and tada! I am a new me.

Yep, here I am in all my crappy hair glory. I'm so sick of it. Please ignore the sewing mess behind me. I can only pick up five pounds or less and am unable to bend over to put fabric away in the bins under my bed (that's my story and I'm stickin' to it.).

Reconstruction, in my mind, is not for the faint of heart. Yes, Angelina Jolie did her thing and she probably did removal and reconstruction all in one fell swoop. Good for her, that means things were easier for her. Plus, she fits into a group know as the "previvors." Those are the women who opt to do surgery, be it oopherectomy or mastectomy, prophylactically (did you just giggle at that word? 'Cause I sure did.), instead of waiting to see if cancer strikes.

I sort of fit into both camps, but because I am an actual SURvivor, as in, yes, I had the big C and I'm still around to talk about it, my options for reconstruction were more limited than what those brave young previvors have to choose from.

Although my oncologist never really talked about how BIG my tumor was until after I brought it up, it was of a size that warranted, based on the best research available to date, 30 or so doses of radiation on the chest wall where my tumor had been located. I now kind of regret following along with this part of treatment for a variety of reasons, and if you are ever in a position to where you are considering such a thing, I'd be happy to share those reasons with you. But in the interest of keeping things short and sweet, I'll leave those details out at the moment.

The reality for me is, I DID opt for radiation, and radiation changes things, especially the skin. As a result, implants aren't a very good option, and if your doctor recommends an implant behind irradiated skin, I encourage you to do a little research. You can do a google search, you can go to facing our risk, or you can read the same book that I did - The Breast Reconstruction Guidebook, by Kathy Steligo. It's a bit out of date (2007, I believe), but it has all the options listed inside.

If you live in an area where any of the flap surgeries are not an option, I would consider going elsewhere. What a pushy thing to say, I know, but it's your body, NOT your surgeon's, and you have to live with the consequences of your choices. Your surgeon does not.

Let me reiterate: I had radiation treatments, therefore, I had a flap surgery. To be precise, I had the DIEP flap reconstruction. That basically means that I had arteries from my stomach muscles removed in the lower part of my abdomen, and then I had a chunk of flesh cut out of my lower abdomen to make each of my new breasts. It was basically like a tummy tuck and boob job all in one.

Did I mention that I've always been a squeamish person?

It's amazing to me that we have reached an age in medical know-how that a plastic surgeon could do such a thing with minimal impact on any of my muscles and none of my organs. Aside from the harvesting of blood vessels, everything was pretty much done on the outside of my body.

It doesn't mean that recovery is as quick as with implants, though.

Today I'm two weeks out from surgery. In a lot of ways I'm in better shape than I thought I would be, and in others, I feel ... I feel like I'm never going to get past this.

I have pretty good range of motion in my arms, something that completely surprised me. After my mastectomy, it took months before I got to a point to where I felt like I was in good shape. It took over a year before I could get out of the tub by myself with any grace. I won't be taking any baths soon because of my incisions, but I don't feel like my upper body strength is totally gone either.

My stomach, on the other hand is going to be something I have to get used to. As you can imagine (or as you can see, if you're like me and google images of stuff like this), I have an incision from hip to hip, a nice big wide grin of staple teeth, and I have a very large patch in my upper abdomen of pure numbness. That's almost more disconcerting than all the rest of it. And smack dab in the middle of all that lack of feeling, I have a belly button nose, surrounded by sutures. I'm not sure if my surgeon had to actually remove my belly button while he was doing his thing and put it back or what, but I knew that my belly button would be affected because of some of the stories other women have written.

Thankfully, I have a compression belt that I have to wear constantly for the next six weeks. I think it's to provide stability to my core while I heal, but that's just me thinking out loud. I plan to ask this afternoon.

Oh, did I not mention? Today is the day for removal - removal of my last drain, my staples, and the remaining stitches. Based on how I felt after the other three drains were removed, I will probably be sore tomorrow and maybe the next day, but the part I am dreading most is the belly button stitches. I can barely stand to feel/not feel something like that. Hard for me to describe, but I guess it's where I can feel the tugging in the muscles and surrounding tissues, but feel nothing in the stitched skin itself.

Incidentally, I want to put this out there, too. If you have stage one cancer and your surgeon only offers to do a DIEP flap surgery for you, GET A SECOND OPINION. If you want a flap surgery, that's fine, but make sure you know what ALL your options are before you settle. I had a friend who got conned into having a DIEP flap reconstruction, and it died. Her very arrogant surgeon never even told her about implants as an option because, sniff sniff, that sort of thing wasn't the kind of work he did.

I'm not going to get into the whole implants for vanity's sake are bad, because that's not really for me to decide. If a plastic surgeon doesn't want to do that sort of thing because his standards are above that, I don't really have anything to say about that either.

But if a woman with breast cancer wants to have reconstruction, and 'you don't do implants,' then it is your responsibility to make sure that she still knows it's an option for her - with another surgeon. Ladies, we have to take care of ourselves on this. Just because I put a call for ethical surgeons to share what they know does not mean that the less than ethical ones will tell you all the facts. Make sure you learn the right questions to ask.

So now I'll hop off my soap box and get on with my day. I still need to brush my teeth (sorry, my schedule's been very willy-nilly since surgery) and I think I'm going to work on getting a bit of my triangle border finished for my Marcelle Medallion quilt. I seldom jump on the bandwagon of the blogosphere or flickr or instagram, but this quilt is too luscious and challenging for me to pass up.

Wish me luck, all good people, and I should be back here before the end of the week to talk about a completely different project.

PS - sorry for the lack of photos, but I just didn't feel like I wanted to share too much. I may want to teach again someday, and while any nudity that would be included here would be strictly for informational purposes, I have to play it conservative to be on the safe side.

congratulations! wow. i give a great big, deep bow to you for surviving that--mentally and physically. the rest is cake, ok?i can't believe how complicated all of that is, and how frightening it must have been, and i'm glad that you are now fully on recovery's road.